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SensationalLearningWithPenguin

@sensationallearningwithpenguin

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Malin - mum of nonspeaking autistic 19yo "W"🐧
Life & learning. Epilepsy, LD, AAC, sensory needs, health, happiness 🤞✨
Born in 🇸🇪 Living in 🇬🇧

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One month ago today, my daughter collapsed completely out of nowhere.

Within seconds, our “normal” disappeared.Back-to-back seizures. Symptoms changing,Fear,Confusion & Questions.

then came a diagnosis…but very little understanding, information or support.Instead, I was left to figure out what I should & shouldn’t be doing, as though I suddenly became an expert overnight.

I didn’t. I’m just her mum.

This past month has been fucking hard.New equipment. Constant risk assessing. Watching her. Supporting her. Learning when to encourage, when to step back & when to stop.

the hardest part? Watching your child go through something you cannot fix.

Sometimes all I can do is sit beside her after a seizure, reassure her that she’s safe, remind her she’s loved & stay close.

Then I look at her siblings. Watching them feel scared.Wondering what is happening. Wondering why her?
& honestly… I wonder that too.

We’ve had to learn to take each day as it comes. Because a good day can become a difficult day.
But right now, she’s slowly finding pieces of herself again.
when you’ve watched your child lose things they once took for granted, seeing them come back feels like everything.But alongside the progress is fear.

I see it in her eyes. The hesitation. The worry about trying things she used to do without thinking. I worry about what this has done to her emotionally.

Because something like this changes you & pretending it never happened doesn’t make it disappear.

I’m scared too.I’m anxious.I’m exhausted & honestly, I don’t know how I’m doing this.

So I’m learning. Every Single Day.

Trying to find that impossible balance between letting her live, supporting her independence & keeping her safe.

Today marks one whole month.
One month of fear.
One month of adapting.
One month of learning.
But also one month of watching my girl slowly come back to herself.

We don’t know what the next month will bring.
So for now…we take the wins.
We hold onto the good days.
And we take it one tiny step at a time.
#functionalneurologicaldisorder #parentcarers #mentalhealth #neurodivergent #fndawareness

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SOMETIMES YOU JUST HAVE TO SAY… FUCK IT.

Sometimes in life, you just need to say fuck it and put your whole being first.

Some people are genuine.
Some people are kind.
Some people make you laugh until you pee.

And then there are some who are just absolute dickheads who don’t even deserve another second of your time.

The ones who make you rage.
The ones who make you question yourself.
The ones who make you doubt your worth.
The ones who somehow make you feel like you’re the problem.

Fuck that.

Sometimes you have to stop explaining yourself.

Stop trying to make people understand.

Stop giving endless chances to people who keep showing you exactly who they are.

Protect your peace.
Protect your boundaries.
Protect your energy.

And most importantly…

PUT YOURSELF FIRST.

Because someone else’s behaviour does NOT determine your worth.

If you’ve had someone like this in your life, please remember:

They are not worth losing yourself over.
They are not worth questioning your worth over.
And they absolutely do not deserve the power to make you feel less than you are.

Sometimes walking away isn’t selfish.

Sometimes saying “fuck it, enough is enough” is the most powerful thing you can do.

Choose yourself. Every damn time.
#fuckit #boundries #peaceful #selffirst #fyp

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To every epilepsy warrior reading this, I see you. More importantly, God sees you. Your journey may be difficult, but you are never walking it alone. Keep trusting Him one day, one prayer, and one step at a time. "Fear thou not; for I am with thee..."-Isaiah 41:10

#epilepsy #epileosywarrior #christian #epilepsyfighter #epilepsycommunity

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“I don’t tell my child to calm down… I teach her she’s allowed to feel it all.” I was taught to hide my emotions… so I’m raising my child to feel hers.

I don’t shut her down when she’s angry. I stay, I listen, I let the storm pass.

Because big feelings aren’t bad behaviour—they’re emotions that need somewhere safe to go.

And in this house… they’re allowed. 🤍. Please read the post and question! Please share and let me know your views. #breakthecycle #gentleparenting #emotions #neurodivergent #language

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Today is International Epilepsy Day 💜

Epilepsy is part of our everyday life.
It shapes how my son experiences the world, how his body and brain work, how he learns, rests, plays and regulates.

It’s not always visible.
It’s not always predictable.
And it’s so often misunderstood.

Behind the statistics are real children and families navigating exhaustion, fear, hope and fierce love, all at the same time. Children who deserve understanding, flexibility and spaces that are built with their bodies and brains in mind, not as an afterthought.

Raising an autistic child with epilepsy changed everything for me. It’s why I do the work I do through @thefriendlysendadvisor and it’s why inclusion, sensory safety and compassion are never 'extra', they are essential.

Today, I’m standing with every family living with epilepsy.
You’re not overreacting.
You’re not asking for too much.
You are a wonderful advocate, keep going.

Awareness matters and real understanding matters. So please do share and join the #EpilepsyPledge

@youngepilepsy @epilepsysociety @epilepsy.inst
@epilepsyaction @epilepsyfoundationaus @international_bureau_epilepsy @epilepsydayrspon @sensationallearningwithpenguin @purpledayss_ @parenting_on_a_different_path

#InternationalEpilepsyDay #EpilepsyAwareness #Neuroaffirming

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Quick question for my epilepsy warriors, has anyone experienced major hair loss after an extensive EEG?
It’s been a month and this is getting unreal.

#epilepsy #epilepsyawareness #fyp #life #question

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Me: Does the epilepsy friendly thing and orders groceries from home
My brain 30 minutes later: "Okay but that was… a lot".🤣

#funnyvideos #lol #epilepsy #epilepsyawareness #fyp

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New year. Same epilepsy. Same strength. Same courage. Same fight. If you’re stepping into this year exhausted, scared, or unsure just know this, you are not alone. Every seizure survived is proof of your resilience, even on the days it doesn’t feel like strength. This post is for the warriors who keep showing up despite everything.

Happy New Year to all my fellow Epilepsy Warriors

#epilepsy #fyp #epilepsyawareness #epilepsywarrior #happynewyear

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Living with epilepsy is more than seizures. It’s the unpredictability, the recovery days that steal your energy, the mental fog that follows, the fear of the next episode, and the constant need to adapt to a body that doesn’t always cooperate. It’s explaining yourself over and over, being misunderstood, and learning how to keep going even when your confidence takes a hit.

This year wasn’t easy. Some days were exhausting in ways that are hard to put into words. There were moments when I had to slow down, cancel plans, or simply push through quietly. Epilepsy doesn’t always show itself outwardly, but it affects everything physically, emotionally, and mentally.

For the people who checked on me, listened without judgment, gave me grace on hard days, and treated me with kindness, thank you. You didn’t have to fully understand epilepsy to show compassion, and that meant more than you know. Your patience, presence, and care helped make the hard days survivable.

Living with epilepsy can be isolating, but your kindness reminded me that I wasn’t alone. I don’t forget who showed up, who listened, and who chose empathy over assumptions. I carry that with me, and I’m grateful for it.

#epilepsy #epilepsyawareness #epilepsywarrior #life #fyp

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Over the years, seizures have left me with more injuries than I can count. Not from carelessness. Not from accidents, but from falls, and loss of control without warning. Every item on that list represents a moment I survived. A body that hit the ground and got back up. Pain that had to be healed. Strength that had to be rebuilt.

Epilepsy isn’t just about what happens during a seizure, it’s what happens after. The recovery. The fear. The resilience it takes to keep living fully anyway.

Epilepsy has taken a lot from me, but it hasn’t taken my voice, my faith, or my will to keep going. I’m still here. Still standing. Still fighting.

#fyp #epilepsy #epilepsyawareness #life #epilepsywarrior

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I went through the testing with hope, because I needed clarity.

Waiting for results is its own kind of exhaustion, and hearing that they weren’t what I needed has been deeply disappointing. It’s hard to put into words how much emotional weight lives in that moment. The quiet letdown, the questions, and the feeling of being left in limbo once again.

Chronic illness doesn’t always come with clean answers or validating paperwork, even when the daily reality is very real. That disconnect can be incredibly painful.

I’m sharing this not for sympathy, but for honesty. For anyone who’s been told “the results were normal” while knowing their body is anything but. I’m still moving forward. Still advocating. Still trusting that this journey has purpose, even on the days when it feels heavy.

#fyp #epilepsy #epilepsyawareness #epilepsywarrior #life

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Some days you don’t celebrate out loud. You just smile a little longer than usual and hope tomorrow feels the same.

#epilepsy #epilepsyawareness #life #fyp #epilepsyadvocate

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